Grace Edwards, 17, wears Epilepsy Awareness sneakers a friend gave her during. Edwards gave a presentation on epilepsy awareness and anti-bullying to dance students at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. (Photo by Leonard Ortiz, Orange County Register/SCNG)

The sash — “Miss New Mexico High School 2020” — always raises questions.

When Grace Edwards wears it to speaking engagements, people ask why Edwards — who is from Yorba Linda, not New Mexico — gets that honor.

She politely explains that the Miss New Mexico High School competition is an “open title” beauty pageant, meaning contestants don’t have to live in the Land of Enchantment to win it.

When she won last year, it meant that 17-year-old Edwards was automatically qualified to compete in a national event, Miss High School America. And if she wins that pageant, to be held in June, Edwards could walk away with $100,000-plus in scholarships, travel opportunities, wardrobe, and other awards.

But even that’s not the full answer.

For Edwards, the satiny white sash with the sparkly trim (and the even more sparkly crown that she wears with it) are central to her current life mission: She’s out to raise awareness about epilepsy, and to convince people not to bully those who suffer from that condition — or anyone.

Grace Edwards, 17, wearing her crown and Miss New Mexico High sash, gives a presentation on epilepsy awareness and anti-bullying to dance students at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy. (Photo by Leonard Ortiz, Orange County Register/SCNG)

Dance students listen to a presentation from Grace Edwards on epilepsy awareness and anti-bullying at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy. (Photo by Leonard Ortiz, Orange County Register/SCNG)

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Grace Edwards, 17, wears Epilepsy Awareness sneakers a friend gave her during. Edwards gave a presentation on epilepsy awareness and anti-bullying to dance students at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. (Photo by Leonard Ortiz, Orange County Register/SCNG)

Dance students close their eyes and raise their hands as Grace Edwards, 17, top, asks them if they’ve ever been a victim of bullying or witnessed someone being bullied, during a presentation on epilepsy awareness and anti-bullying at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. (Photo by Leonard Ortiz, Orange County Register/SCNG)

Grace Edwards, right, and her cousin Logan Verne attend last year’s Epilepsy Awareness Day at Disneyland Resort in November 2019. Grace started a nonprofit called Talent for Epilepsy, inspired by Logan, who was diagnosed with epilepsy as a baby. (Courtesy of Red Havas)

Dance students listen to a presentation from Grace Edwards, left, on epilepsy awareness and anti-bullying at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy. (Photo by Leonard Ortiz, Orange County Register/SCNG)

Yorba Linda teen Grace Edwards, 17, gives a presentation on epilepsy awareness and anti-bullying to dance students at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy.(Photo by Leonard Ortiz, Orange County Register/SCNG)

Grace Edwards, 17, top, is seen in the reflection of a dance studio mirror as dance students listen to her presentation on epilepsy awareness and anti-bullying at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy. (Photo by Leonard Ortiz, Orange County Register/SCNG)

Michelle Edwards mother of Grace, 17, takes a video of her daughter as she gives a presentation on epilepsy awareness and anti-bullying to dance students at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. (Photo by Leonard Ortiz, Orange County Register/SCNG)

Grace Edwards, 17, right, gives a presentation on epilepsy awareness and anti-bullying to dance students at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy. (Photo by Leonard Ortiz, Orange County Register/SCNG)

Grace Edwards, 17, wearing her crown and Miss New Mexico High sash, gives a presentation on epilepsy awareness and anti-bullying to dance students at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy. (Photo by Leonard Ortiz, Orange County Register/SCNG)

Susan Janson, owner of Kick It Up Dance and Fitness Studio, listens to a presentation by Grace Edwards, 17, a former dance student, on epilepsy awareness and anti-bullying to dance students at in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy.(Photo by Leonard Ortiz, Orange County Register/SCNG)

Dance students listen to a presentation from Grace Edwards on epilepsy awareness and anti-bullying at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy. (Photo by Leonard Ortiz, Orange County Register/SCNG)

Yorba Linda teen Grace Edwards, 17, gives a presentation on epilepsy awareness and anti-bullying to dance students at Kick It Up Dance and Fitness Studio in Long Beach on Wednesday, February 5, 2020. Edwards started her epilepsy awareness advocacy when she was 7 inspired to do something on behalf of a younger cousin who has epilepsy. (Photo by Leonard Ortiz, Orange County Register/SCNG)

A disorder of the brain, epilepsy can be related to genetics. Or it can be caused by any manner of trauma — a head injury, a stroke, a brain tumor; or infections of the central nervous system. Epileptic seizures can range from moments of confusion or blanking out, to falling down and jerking uncontrollably for up to several minutes.

The Centers for Disease Control and Prevention reports that as of 2015, the latest year for which data is available, 3 million American adults and 470,000 children suffered from active epilepsy. The most cases (417,000), were in the biggest state, California. And, the CDC noted, epilepsy was on the rise.

The disorder can touch any age.

Verne was diagnosed at 2 years. And Edwards has been in her cousin’s corner from the time she also was very young. He was bullied at school and, she notes now, he’s home schooled. He uses a treatment called VNS (vagus nerve stimulation) Therapy to control his seizures.

Much of that is covered in the speech Edwards gives at public appearances. Edwards gave one of her presentations earlier this month at Kick It Up Dance & Fitness Studio, a Long Beach center where she once took dance lessons. It’s still one of the places she visits on behalf of Talent for Epilepsy, a nonprofit she started when she was 7.

Grace Edwards’ mom, Michelle Edwards, is her biggest supporter. She helps run the nonprofit and drives her daughter to school presentations as distant as Barstow and Palmdale. The pair also have traveled the beauty pageant circuit, visiting Florida, New York, Arizona, Nevada, and all over California.

Recently, Edwards has incorporated the message of the national anti-bullying campaign BRAVE (Building Respect and Values for Everyone) into her talks at schools, workplaces, senior centers, community groups, and beauty pageants.

She also talks about the importance of information.

Edwards was still very young when, during a family outing at Disneyland, her cousin had a seizure in public. They were inside one of the park’s restaurants and people around them panicked, including, Edwards said, people who worked at the park.

“Nobody knew what to do,” Edwards recalled.

But Edwards, 7-years-old at the time, did know. She told the gathering adults what was happening and tried to keep everyone calm as her aunt administered proper first aid — putting Verne on his side, placing something soft under his head, and staying with him until he was safe.

“I said to my mom as soon as I got home, ‘Why don’t people know about this?’ She said it’s just something people don’t talk about,” Edwards said.

“I wanted to get the entire world in one room so I could teach them all seizure first aid.”

Edwards continued to think that there was something she could be doing to educate people about epilepsy: “It was always on my mind because Logan was always having seizures, whether it be gran mal or blank stares.”

Speaking up

Edwards started Talent for Epilepsy with the encouragement of Kick It Up owner Susan Janson, her dance teacher at the time. Janson continues to help Edwards prep for pageants and, because of that, she’s not surprised that Edwards has broadened the epilepsy message to include bullying.

While on the pageant circuit, Edwards — who hopes to study architectural engineering in college — has heard plenty of catty remarks, often from adults. It’s part of that world, Janson said, and Edwards has pondered the value of speaking up or ignoring it.

“A lot of times, you can’t do anything,” Janson said. But other times, “people don’t even recognize that they’re doing it.”

At Kick It Up, as Edwards spoke to a group of about 20 young dancers, ranging in age from 7 to 17, she seemed to have an answer.

She had the kids close their eyes and raise a hand if they had been bullied. Maybe half did so. Then she asked who had witnessed someone being bullied. Nearly all responded.

She advised them on how to respond to bullies.

At the end of her 15-minute presentation, Edwards led them in a pledge.

“I have a responsibility as a bystander,” they repeated, “to protect other kids from being bullied.”

Theresa Walker is a Southern California native who has been a staff writer at The Orange County Register since 1992. She specializes in human interest stories and social issues, such as homelessness. She also covers nonprofits and philanthropy in Orange County. She loves telling stories about ordinary people who do the extraordinary in their communities.

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